Does anyone have experience of CFS/ME clinics as a hypothyroid patient

[amasufindme]

I am on combination therapy LT4 50mcg/LT3 30mcg and struggling to attain a euthyroid state. My symptoms are chronic insomnia, chronic fatigue, muscular pains, leaden limbs, brain fog, needing recovery after exertion "boom & bust", headaches, sore throat and depression/anxiety. Most of these symptoms I know can be attributed to hypothyroidism, yet after much dose fiddling since November 2016 I still have these symptoms, so have requested a referral to a CFS/ME specialist. My Endo suggested I may have CFS/ME.

I am aware that the GET/CBT treatment can be medieval for some and I wanted to know of anyone's experience of attending these clinics and the treatment, and how the health practitioner factors in the hypothyroid state especially with Hashimotos. In the 2007 NICE guidelines for management and treatment, it mentions that patients should not be given Thyroxine so precluding hypothyroid patient from the CFS/ME treatment, it seems.

I feel like I am falling into a snake pit, yet I need a formal diagnosis especially for DWP evidence.

Any shared experience gratefully received

[cwill]

ME clinics and services are staffed by HCPs versed in the BPS rubbish so be very wary. The NICE guidelines mean rather that CFS ME patients with “normal” bloods should not be offered a thyroid hormone trial. We know that to be completely wrong as we have issues with conversion and transport of hormones which together with the latestest research regarding lowering ranges in diagnosed population mean that most of us are crying out for treatment and preferably T3.

I hear dreadful tales of referral that takes a year for an appointment and no diagnosis given by the GP. All you need for a diagnosis is a thorough examination and testing phase that GPs should be capable of. You should also be referred to neuro, gastro to rule out MS gut issues etc.

Get them to check B12 in detail or refer. Beware that once supplementing tests are of little use. Inject if necessary for energy trial and consider the same for magnesuium. I hear of other patients having MRIs, scans and multiple tests of all systems but most of us are assessed briefly and then told to go away. Dr Myhill has the test and supplement guide of choice for fatigue of unknown origin, but beware her products that contain iodine.

[amasufindme in reply to cwill]

Thanks cwill, I appreciate your wise words... the reason for me walking through this snake pit is to get the proverbial stamp on my forehead for the DWP. It does fill me with dread, but I can always decline the referral! I know the treatment will be very, very rubbish... its being in the system and ticking the box. I am already helping myself as best as I can with the little money I have. The GP who referred me to a ME/CFS specialist wanted to put all my listed symptoms under my mental health issues i.e. depression and anxiety (she is such a d*ck) ... so I don't think primary care is gonna help!

Not under Neuro, but I am currently under Gastro scrutiny... however all he is interested in is cancer, crohns, coaliec, IBD etc. I am working with a nutritionist. So I am having Cyrex array 2 intestinal permeability and also Genova microbiome - already on modified Paleo diet with SIBO protocol. My Vitamin B12 (active serum) is top range and folate/ferritin/iron/vitamin D all good with continued testing and supplementation. Magnesium level is good

Sadly I have not got the money for Dr S Myhill, but I do have her book Diagnosis and Treatment of CFS/ME which I am slowly getting through.

NHS support for these symptoms is all very, very, very sh*tty!

[cwill in reply to amasufindme]

Dr Myhills list has been closed for the best part of my illness but she has a fantastic website and books so we can try the DIY route. So accept the diagnosis if necessary but don’t do CBT and GET as they are a con and are most likely to harm you. Check out the MAIMES campaign and the parliamentary debate on 20/02/18 covering PACEgate.

We have all been harmed by PACE as the biophychosocial model of illness has been swallowed uncritically by pretty much everyone, one of the reasons for being disbelieved when we report our symptoms. I urge everyone to follow the campaign as most of us can say ‘me too’.

[amasufindme in reply to cwill]

Thank you cwill, very poignant words... hopefully I can get NHS diagnosis of CFS/ME and then walk away from the clinic and continue my own testing when funds are available. Although Dr Sarah Myhill is not taking on any new patients, from her webpage drmyhill.co.uk/wiki/Orderin... it looks like I could get the Acumen/Biolab mitochondrial function tests without interpretation.

I will keep in touch with the MAIMES campaign.

Another aspect to consider for myself is that I score very high on the chronic lyme disease Dr R Horowitz chart ... so really I need to do the CLD triangulation test... sometime in the future. I would rather test not guess, because I find myself taking expensive supplements blind and with my maelstrom of symptoms it is hard to know whether they are beneficial.

Thank you for your time on this post, it has helped to solidify my future course. I will have to deal with sh*tty HCP (&DWP) behavior as and when it occurs.

[HighlandMo]

I was also going to suggest Dr Myhill's book and website. drmyhill.co.uk She is not taking new patients but her website is full of useful information. I have been to another private doctor who uses her tests and diet/supplements and have found a big improvement after taking loads of vitamins/minerals including B vitamins, zinc, magnesium and others! Dr Myhill is actually spearheading a campaign against standard treatment!

[amasufindme in reply to HighlandMo]

Thank you HighlandMo, yes I have been dipping into Dr M website recently and have a couple of her books inc. Diagnosis and Treatment of CFS/ME.

I am continuing to supplement in a targeted way - hair mineral analysis showed my zinc was very low too. Have you used Biocare Mitoguard? - my nutritionist recommended it, but not sure if its another supplement hole in the pocket.

I spotted her campaign drmyhill.co.uk/wiki/Medical... and I hope NICE will include all patient feedback in their review - PACE trial.

[Hillwoman]

I would endorse what cwill and HighlandMo say about avoiding CFS clinics and reading instead Dr Myhill's book on the subject, and also her website (updated regularly).

You need medical evidence for DWP purposes, so if you have any savings, or you can ask family or friends for financial assistance, it might be worth having a look at the BSEM website and find out if there's a practitioner treating along the same lines as Dr M, who might be able to help you.

bsem.org.uk/

[amasufindme in reply to Hillwoman]

Good info Hillwoman - thankyou, my resources/funds are determined by DWP support...so its ironic... gotta go into the snake pit to help myself or perhaps not!?!

BSEM is useful - thank you - and a private GP with the Dr M way, may well be the way forward to get the required evidence, as well as hopefully sound guidance. I will have to go into debt (not good) ... this is so unjustly sh*t isn't!?

My nutritionist is retiring soon, but has been extremely helpful with protocols for my gut dybiosis/damage and tailoring my modified Paleo diet. So I have certainly made a lot of progress over the past year

[Hillwoman in reply to amasufindme]

I'm really sorry that you have to throw yourself on the mercy of the DWP to survive. If there is any way you can avoid it, don't get into debt. And yes, it's deeply ironic that people have to spend money they don't have just to gather the evidence to claim the help that is theirs by right.

I wish you luck.